“Mom, I bet you’ll like this catalog because you’re a fashion lady.”

“I’m homesick. What does that mean?”

“Mommy, this Galaga game has guys (spaceships) shooting other guys (other spaceships). Is that appropriate?”

“Mommy, you look divine. What does that mean?”

“We had a bus evacuation drill today. It was an A-. I wanted a slide out of the back of the bus instead of a jump down. But otherwise it was good.”

“It’s really easy to talk to birds. You just have to speak their language. Like, ‘Tweet, tweet, tweet, tweet.’”

          C has a version of something called Dermatillomania (also known as compulsive skin picking or CSP). It’s an impulse control disorder like the more well known trichotillomania (hair pulling), and is a cousin of OCD. What it means for C, which is slightly different from the traditional presentation of the disorder (of course it is; C always does things in his own way), is that he picks scabs over and over and over and over and over. After a particularly mosquito-y summer visit to Tennessee, we found ourselves wrapping his legs in medical tape so that he couldn’t get to the band-aids, pull them off, and pick. The kid goes through more band-aids than I can count, and we should own stock in bandage companies.

     C has yet to create a wound from nothing, but he has opened up old scars. There’s a leftover tiny cut on the top of his head from an oops with the hair clippers, and he’s now going on one and a half years (yes, years) of re-opening this wound. It has changed the pattern of his hair growth and I fear it will get to the point where he will be the only eight year old in the world with a bald spot. C spent half of last year wearing a hat all day, every day – we had to get special permission for him to wear it to school – to help. We’ve tried everything; we’ve yelled, we’ve begged, we’ve bribed, we’ve taken things away, we’ve given him fidgets for his hands, and of course none of it works for the long term. I suppose we thought he would grow out of it, and that we were doing all we could to help him do so. I remind myself that it’s not as if C can control it, but it still infuriates me like nothing else he’s ever done. I know that’s where I’m failing him the most as I’m sure he’s even more upset about this than I am, and probably far more confused about it than I am. This requires sensitivity on my part, not frustration.

     Save therapy, which to this point has seemed an unlikely path for this particular child, there’s only one other thing we haven’t tried. The one thing a doc who saw him two years ago for five minutes wanted us to try. A prescription for Zoloft, Xanax, and whatever other mood-altering drug you can name. “It will clear this right up,” he said as he tried to shove me out the door with script in hand. “It will probably solve those feeding issues he has too.” This was no expert; it was a hometown family doc who seemed to want to solve everything with a bottle of pills. If he hadn’t thrown in that last completely ignorant blip about C’s feeding issues, I might have fallen for it, so desperate was I.

     I don’t mean to go all Tom Cruise on this issue, but I’m pretty much against meds for my kid. I believe there are cases where drugs are absolutely necessary, but I don’t yet believe this is one of those situations. The research doesn’t show an enormous amount of success treating this issue with drugs. Couple that with the fact that I think C is precariously perched on the top of a fence - on which one side lies health and the other a downward spiral of medical issues - and body chemistry altering meds are not an experiment I find worth the risk.

     But where I wasn’t ready before, I’m ready now. I’m waving the white flag; I realize I’m in over my head and I surrender. So now begins the search for a psychologist or a psychiatrist who is able to do cognitive behavioral therapy (apparently the type of therapy that sometimes works with this disorder) on a kid who isn’t particularly enlightened about his own triggers nor the emotions that go with them. A search for someone whose first instinct isn’t to write a script, and a search for someone who has dealt with this before. A search for someone who won’t be fooled by C’s seeming grasp of language and its components. A search for a knight in shining armor, an angel who needs her wings, a healer who will be able to read this kid in a way no one ever has before. I hope this person is out there, waiting for us.

     I remember the first developmental pediatrician we ever saw; she was the one who gave C three diagnoses to add to the zillion that came before: high functioning autism, hyperlexia, and developmental coordination disorder. “Get him into team sports,” she said. “He needs the socialization. Soccer, maybe.” This was after I said I was thinking about karate, which I’d always heard is good for kids with autism.

     We tried both soccer and karate, with varying degrees of success ranging from marginal to disastrous. Soccer was a special needs league. It was like a field of kittens with puppy buddies trying to help the kittens play on a team. It was all sweet and good, but it was useless for learning much of anything. In the team picture, which I look back at with a mix of bitter and sweet, not a single kid was looking at the camera. I took that as a true reflection of the delightful insanity that was that soccer season.

     Karate, however, was a nightmare. Movements and sequences that were way too hard were combined with 25 kids in a loud gym and an instructor so strict and uncommunicative that C had no idea why he ended up in time out halfway through the first session. We made it through exactly three classes before we forfeited the ridiculous amount of money we paid for that semester and never looked back.

     Team sports have now given way to individual ones, and tennis and golf seem to be of interest. Now, in our third fall in one place, C is taking tennis lessons for the third year. He has always had but one goal: to hit a ball over the fence. He couldn’t even come close the first year, and last year wasn’t much better. It wasn’t until tonight, in his second lesson of his third year, that he proudly and solidly sailed a ball right over the fence and into the likely rattlesnake and scorpion infested bushes. 

     I suppose that tennis ball is a metaphor for C’s amazing growth and progress in the last few years. If I were the type of Mom who revels in these things, I’d see all kinds of not so hidden parallels between all these years of effort and the ultimate achievement of such a lofty goal. I’d get teary eyed with the thought of how hard C had to work to get this far. Instead, I gladly ventured into those bushes to retrieve said tennis ball, all the while sneakily wiping non-tears from my eyes.

     C loves the ladies. And they love him back. From his early days of charming grandmotherly types at the post office and calling every woman he saw a “pretty lady,” it’s always been about the girls. There’s a few he’s left behind; most notably the “it” girl of elementary school, if there is such a thing. He adored her from afar, and from not so afar, as he asked her every day the first few months of school if he could sit with her at lunch. Given that she said “no, thank you” every single time (at least she was polite, I suppose), I’m hoping he finally realized that some things just aren’t worth it. Silly girl – she doesn’t know what she missed.

     Yet there’s one girl C has left behind that tugs at my heartstrings. A non-verbal, special needs girl who was in his class last year. C worshipped her. Every day he would rush to school so he could play with her in the sand while waiting for the morning bell to ring. Hours upon hours added up of their sitting in the sand together at recess and before school. She never spoke save a few words in sign language, but I believe her love of him was as deep as his for her. They hugged each other dearly every morning when they first arrived.

     This year, however, she’s not in C’s class, and one member of his team suggested that it was good for him as he needed to move on from her. “He needs to grow beyond her instead of ‘hiding’ with her,” the team member said, and I knew she was right. But I also know why C loved her so; she was safe. Aside from being completely sweet and lovable herself, she never turned him down when he wanted to play with her, never said an unkind word, and always welcomed him with open arms. Who wouldn’t love that?

     C cried when he found out she wouldn’t be in his class this year as his little heart broke into a thousand pieces. He got over it as he settled into his new class and started making friends. Yet every morning when we walk onto the playground before school, she turns his way, her little face lighting up in the tiniest of ways. And unless I point her out, C just doesn’t see her anymore. He has moved on, which makes me both happy and sad at the same time.

     C has a friend. A best friend. A boy who shares his fanatical interests in silly noises and Mario. They talk on the phone endlessly, trade houses for playdates, and send each other notes home in their school folders. I’m so happy I could cry. It’s wonderful, really, that C finally has a real friend, and when he talks, it’s all “T” all the time.

     Yet with this grand first friendship unfortunately comes a grand drawback. Before C came along, T was inseparable with “R” for many years. Now R is on the outs. Worse, R has an autism diagnosis. Worst, C has never excluded anyone from anything. Until now.

     C and T are doing the usual when three’s a crowd; they are ganging up against the third. Yes, you heard right, my own sweet special needs boy is participating in the unhappiness of another special needs child. It’s not all the time as there are times at school when the three interact nicely together, but R has clearly been replaced in T’s world. C doesn’t know R has autism, and C doesn’t know he himself has autism. What C knows, I believe, is that for the first time ever, he has a best friend, and it feels good. I can’t begrudge him that.

     I suppose most parents would either ignore the behavior or talk generally with their child about being kind to everyone, and the behavior would continue or it would not. Neither of those options work for me. Given my natural protectiveness of children with special needs, I’m not sure which is more painful to me: that this particular child is being hurt or that it’s my child who is partly responsible for the hurting. I simply can’t just ignore the behavior, no matter how much I’d like to say this behavior is a natural part of growing up. C has been on the receiving end of this kind of behavior far too much to simply let it go when it comes from him. And talking generally with C about being kind is never going to sink in to the point he realizes I’m talking about how he treats R.

     So I had to go for something more dramatic, something C would not confuse or only partially hear. I pretty much read him the riot act, complete with telling C he wouldn’t be allowed to play with T on the weekends anymore if the two of them couldn’t figure out a way to be kind to R. I reminded C that he too had been left out of groups and how upset he was by it.

     What I realized, unfortunately too late, is that this approach didn’t work either. It became painfully obvious, after a particularly unproductive, mostly one-sided conversation, that I had blown it completely. C had no real idea what I was talking about. I figured on some level he knew he was being unkind, but he really didn’t. It simply did not occur to C that R was hurt. And that is what broke my heart most of all.

1 car window + 1 child who likes to play with the window controls + 1 Mommy who forgot that very important fact and put her hand in the window = 3 smushed fingers, 1 trip to the emergency room (on Halloween night, no less), 4 x-rays and fortunately, no broken bones. Just ouch. 

I’ll be back when it takes me less than 20  minutes to type one sentence!

This kid is ready to DRIVE! Is MY seatbelt fastened tight enough???

It’s only a matter of time before C is smiling because of the view behind him, but for now, I like the smiling out of sheer joy of sitting in the sand.  It was only a few short years ago when C wouldn’t even get in the sandbox!

     We’ve always known C has a tendency to go from one end of the spectrum to the other (no pun intended) in learning new skills, which made teaching him how to speak up for himself appropriately no small task. In preschool, when a kid would knock him down and take his toys, C didn’t protest. Then, in 2nd grade, he went from not telling anyone when a boy was physically and emotionally bullying him to telling anyone and everyone when that same boy even looked in his direction. When it comes to self-advocating, the difficulties of teaching C how to speak up for himself without going overboard has been a delicate balancing act.

     There are a few signs that C is growing successful in learning this ability. Whether it’s because of his comfort level with his 3rd grade teacher or his own personal growth, he is learning to at least sometimes speak up to her when he needs to. Helping C realize that adults in school are there to help him has been, for reasons unexplainable to me, very difficult. While he has bonded with just about every adult on the premises, it seems it wouldn’t occur to him to ask one of them for help if he needed it.

     The first time C had his card turned this year (unfairly, in his opinion), he was devastated. I knew the minute he walked out of the building that he was upset, and he barely made it into my arms before the tears spilled. We talked it over, and he decided he wanted to email his teacher. “Dear Mrs. D,” he wrote, “I wasn’t talking when J was doing checks recorder but he wrote my name down on the board. J thought I was talking but it was really K. It made me kind of disappointed when it happened and it upset me too.” He talked, I typed, he clicked “send” and off it went.

     C still won’t say anything like that in person, but I was impressed that he could at least get it written down, and I was proud of him for speaking up. It didn’t get him anywhere; the day was over and the deed was done, but he felt better about the whole experience and was able to let it go. And at the end of the day, that’s how I want him to feel about issues he has – perhaps they won’t all be fixed and wrapped up in a bow, but at least he can deal with them in a way that satisfies him.

     I spoke with a friend today whose daughter is home sick from school. Mom’s comment that S was “sitting on the floor playing with her stickers and coloring” while Mom worked from home rendered me momentarily speechless. You mean kids actually do that? Sit on the floor and play quietly by themselves? Seriously? Wow. Just WOW.

     I marvelled for a moment at how different our two kids are. When C is awake, it is a constant, all-consuming, every moment affair. If he’s actually quietly playing somewhere, chances are he’s overflowing his sink, testing to see if the flashlight works in the toilet, or pulling the ears of our way-too-patient dog. When it’s too quiet in our house, there’s a problem, or else everyone is asleep.

     C’s need for interaction, any type of interaction, is simply so great as to make me wonder if C recognizes he is in fact his own independent person. It would seem that he is almost solely validated by his relationships with other people, which I suppose doesn’t exactly fit the stereotypical ideal of someone with an autism diagnosis.

     While all of my pondering on this subject has yet to yield a reason for it, the effect on me - the INFJ on the Myers-Briggs Personality Profile - is great. Perhaps now I value my alone time more since it is more rare, but I find myself staying up late at night, enjoying solitary trips to the grocery store, and yakking on the phone with girlfriends, well, never.  It’s almost as if C believes he ceases to exist if he is by himself, and I feel as though I can only remember my true self when I am alone.

     When I was in college, I pledged a sorority. I didn’t really want to, but my parents encouraged me with stories of how much their lives were enriched by Greek clubs while they were in college. The short version is that the hazing, something I have never really fully put behind me, changed my college experience entirely. The final straw for me, however, was talking to a pledge sister about the hazing, hoping we could change the experience for the next year’s pledges. “I can’t wait until next year,” she said, “when I can pass all of that hazing on and do it to the next group to come through.” That was it for me; I quit.

     The difference between C’s experience and mine is that my experience was voluntary on my part. C has had no such choice in how kids treat him. Yet recently, I discovered how quickly the tides can turn. C has “infiltrated,” for lack of a better word, a group of two boys and become the third in that group. I have watched this friendship develop with a certain amount of trepidation because of the tightness of the original two combined with an autism diagnosis for one of the boys. I suspect it was just as hard for “Andrew” to make friends as it has been for C, and I was concerned that in this situation, three might be more than a crowd.

     When C came home from school today saying that Andrew told C and ”Billy” that he wanted to “break up” with them, I was immediately on alert. C talked about how he, Billy, and Andrew were playing a game, and Billy started to tease Andrew a little bit. C apparently joined in the teasing against Andrew, and from his description of the event to me, I’d say it was with a certain amount of joy.

     Whether C relished the new-found feeling of being tight enough with someone that the two of them could be against a third, or if he’s just so happy to have a friend that he will follow whatever comes along I’m not sure. What amazes me, however, is how quickly this can happen. In a span of days, C went from being the odd one out to the one excluding another. I was nothing short of stunned, having never seen this type of behavior from C before.

     I suppose it feels so unusual for C to be on the giving instead of the receiving end that consideration of another’s feelings just flew out the window. It’s all harmless playground drama for most kids, but it’s exactly the kind of thing that has hurt C so much in the past. The irony of the fact that Andrew also has a special needs diagnosis is not lost on me. I’m hopeful C will quickly realize that being on either end of the teasing specturm is sad and make nice with Andrew once again. And in a world where three is almost always a crowd, two boys with autism and a third – who is also not your average joe kid – might make for more than one friendship group can survive.